Hi, I’ve had a mysterious illness the past 4 and a half years. It’s been going on since I was 14. I shared my story about a year ago and just wanted to give an update because it has been extremely tough on me. I am at the lowest weight I have ever been in my life, 108 lbs. I am still stuck at a point in my life where the doctors have not actually found a diagnosis. They are kind of saying gastroparesis because my symptoms match up perfectly, and they found extreme distension in my second CT scan.
After my CT scan, I had a Smart Capsule Study, and that did not show any small bowel obstruction, which would have completely confirmed my gastroparesis. But this test did show a huge delay in the emptying of my lower intestine. The delay in my lower intestine is what is causing my severe constipation, which has only been going on the last 5 months, not the past 4 and a half years of having this mysterious illness. So that test didn’t give many answers.
I was on domperidone a few months ago, and that did not make a difference whatsoever. For the past 3 weeks, I have been on Marinol, Remeron, Linzess, and Prilosec. I have also been taking ginger capsules every day, along with my medications. So far, no change in my illness, other than going to the bathroom a slight bit more. I now have more gas, pain, and distension in my stomach because of these meds.
My symptoms these last 4 and a half years include vomiting 20-30 times a day, 365 days a year, an extreme amount of pain in my entire abdomen, struggling with breathing normally (may be because of my exercise-induced asthma), extreme fatigue, feeling EXTREMELY WEAK, unexplained bruises, extreme dehydration, extreme bloat, and feeling full way too quickly. The doctors just don’t seem to be paying attention to how much weight I keep losing and the fact that I ABSOLUTELY DO NOT EVER KEEP ANYTHING DOWN. I mean ANYTHING AND EVERYTHING WILL NOT STAY DOWN. I am not gaining nutrients, and I am slowly fading away. It has been so hard, and it just keeps getting worse. I am trying my best to stay happy and strong, but it is so difficult…
Read Jessica’s previous Power Story post here: https://www.fightlikeagirlclub.com/jessicas-fight-like-a-girl-story-gastroparesis/
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
Have your doctors check for the absence of or displacement of mysentary. I was born without it and spent my life being told that my extreme abdominal issues were psychosomatic. This attitude almost killed me. My symptoms were somewhat different but I also suffered from an inability to gain weight, extreme constipation, and ongoing stomach aches. It’s worth checking into. The mysentary cannot be seen on X-ray or CTScan. GI series also doesn’t show it unless there is a blockage. Mine was only found during surgery to remove my appendix.
So much Awareness needs to be spread about this disease. When my cousin was diagnosed with it 20+ years ago the doctors told her it was “all in your head”… now we hear from people everyday fighting the same disease… with a heavy heart I share the story below to try and raise awareness… CONTINUE TO RAISE AWARENESS PLEASE!!!
The world recently put to rest a great fighter… I’m not talking about Muhammad Ali. As the world was mourning over the loss of a well know fighter, Muhammad Ali… in a small, picturesque town in Iowa there was much mourning over a lesser known fighter that some say rivaled that of Ali. She fought half of her life battling a rare condition that most people don’t even know exists. Her loved ones planted her body into the Earth knowing that her memories will grow into something special. They will grow into awareness and eventually lead to a cure. A cure for a disease so tragic and yet so little is known about.
The dates aren’t important or significant. What’s important is the dash between that matters most. How one woman made such a large impact on so many lives and so many more yet to come. From what I know, their story begins sometime in the late 1990’s. Again, the numbers aren’t important, it’s the story that matters. They met in a small town, in Iowa, where he just started teaching and coaching. We’ll just call him “coach”. She just finished college and was a new teacher herself, but she grew up in the town. She went to college on a basketball scholarship but had to stop playing because of her disease. She didn’t know what it was at the time and was told she just had a “virus” or the flu. Two weeks after they started dating she reserved a place for their wedding. She knew they were going to get married. Coach proposed to her a few months after they met. There were married only one year after they met. They got married at the place she reserved, on the date she reserved, two weeks after they met. It was meant to be.
Not long after they were married she got pregnant. At one point during the pregnancy they thought the baby was lost, but the ultrasound said he made it through. Shortly after birth she developed endometriosis and had to have her uterus removed. All the while she was fighting off the “mystery virus”. Some days and weeks it would go into remission while other times it would not. These were the early years. They didn’t last long and every year it would be less in remission. Their son never got to know his mom without her “mystery virus” and in 5th grade wrote that all he wanted was for his mom not to be sick anymore. On the day of her funeral Coach told his son “she won’t be sick anymore”.
It was the most I’ve ever cried, and laughed, at any funeral. It started the night before at the wake. It was 90+ degrees in the shade and very humid. There was a line outside the funeral home for hours until the sun went down. They said over 1,800 people showed up that evening, in that small town, to pay their respects. Most waited outside in the heat for an hour before they could get into the building. Inside the funeral home was warm because the doors were held open by people filing in and out, non-stop. There was a video playing with music, people telling stories, laughing, and crying.
The next morning, they had a final viewing for the family, after which they closed the casket. All of the family got into their cars and drove in a procession to the church. Their family is pretty large, so there were quite a few cars. The procession of cars was so long that it shut down all of the major roads in town as it weaved from the funeral home to their church. Everyone in town stopped on the sides of the road as they drove through, to pay their respects. There were workers along the route that stood by the side of the road to pay respects. The mail carrier, who was working her route, stood at the edge of the sidewalk solemnly with her hands crossed in front as the cars drove past. When the procession arrived at the church, led by the hearse, they had to close the street in front to park all the cars of the family members. They put the cars in four rows filling the street for the entire length of the block. The family lined up outside the church behind the casket waiting to enter.
After a few moments they walked single file into an already full church and sat in reserved spots in the front. A pastor stood casually up in front wearing jeans and a nice shirt. Once everyone was seated he began speaking. He spoke about the family and how he knew them for quite some time. After that he read a quote and then a man came to the front with a microphone. He sang the most beautiful song I’ve ever heard. There wasn’t a dry eye in the place. The next thing that happened surprised everyone in the place. Coach walked up to the front and spoke about his wife in the casket directly in front of him. He had a slideshow that he spoke from which had exactly 22 slides, her basketball jersey number in college where she played before her “mystery virus” made her have to stop. He spoke about many life lessons. Many things that he learned from her. He talked about her strengths and even cracked a few jokes. Everyone in the room was sobbing and laughing at the same time as he spoke. There were strong, grown men balling with their heads in their hands. You could hear people letting out loud muffled sobs into tissues. All the while Coach kept his composure and continued speaking about the slides. A few times he would pause for a moment and then continue speaking. This went on for more than half an hour.
Shortly afterwards six men walked down one of the isles, up to the casket. They put it into the hearse and everyone got into their cars to follow. At the cemetery there was a tent and everything else setup similar to other funerals I’ve attended. We all crowded around and under the tent as we stood sweating in the 90+ temperatures. The pastor gave a great talk and then the funeral conductor said the ceremony here was finished. He invited everyone back to the church for food and beverages. No one moved. We all just stood there waiting. Then Coach walked up to the funeral director and whispered something into his ear. The funeral director announced that Coach wanted to close the grave. I don’t think he could just leave there, so he made them take her away from him. The funeral director rushed off and got the man who dug the grave. The grave digger came over wearing his dirty jeans and tank top with tattoos on his large forearms. He was sweating, probably from opening the grave site a short while before. The funeral conductor, in his suit, helped the grave digger crank and remove straps to get the casket into the concrete vault. All you could see were tears streaming down the faces of everyone from behind their sunglasses as Coach kissed the casket and pressed his hand into the wood which surrounded his wife’s body. After it was lowered to the bottom, he walked over and shook the grave digger’s hand “Thank you very much”, he said. Then he walked over and grabbed his son’s hand “come on, let’s go”. They walked back to the vehicle that brought them to the cemetery and left.
FEAR -> FTA
There were so many important things that Coach said in front of everyone that day. The most important for me was to keep her spirit alive, which is why I decided to write this. Everyone in the world needs to know how terrible this disease is and become more aware of it so a cure can be found. Thinking of this disease makes me very angry. I was once talking with Coach about the disease and he said all they wanted was for people to spread awareness and to donate for research. They were suffering like many who suffer with “rare” conditions because there isn’t enough money to fund the research.
I know there are many conditions out there that need funding for research. I know there are many people who suffer from terrible diseases. I feel for all of them and every time I read a personal story it helps me understand them even more. Sometimes the story touches me and I find a site to donate for research. I hope that anyone who reads this finds it in their heart to spend some time looking into the lesser known diseases, which are severely underfunded. The more people hear real stories about people suffering from them, the more they might be willing to help. I didn’t include any names or detailed information about the family because they aren’t aware that I wrote this. They like to keep to themselves and spread the word by their actions. They never complain about anything that happens to them. They give their time and their lives to help others. When I was helping unpack the flowers and memorial stones at their house, I saw a letter from a student who graduated from the school where Coach taught. He wrote “Thanks for the gift Coach. But, especially thank you for teaching me all of the important life lessons and being there for me.” I’m sure that he has received hundreds of these same letters from past students and athletes.
The disease that Coach’s wife suffered from was called Gastroparesis, in its worst form. Please take the time to research it and donate to help find a cure. Gastroparesis Sucks!!
Thank you for taking the time…
Over the years I have been diagnosed with a lot of problems, all of which were either GI or reproductive in nature. In the years proceeding I was often told or hinted at that there was nothing wrong, it was stress, or it was some “unspecified gastroenteritis” or IBS. In the end the root causes were none of these things. I was globally scanned so often my PCP said no more because I was exposed to too much radiation. And yet my symptoms remained similar to yours- no appetite, bloating (sometimes to look 5-6 months pregnant), unpredictable bowels (corked for months then diarrhea 6-8x/ day), lethargy but periodic inability to sleep, ridiculous intestinal spasms, constant upper right and lower back pain, and vomiting. The worst was when I had diarrhea and vomiting for over 6weeks at a rate that I lost 1-2 lbs per day, had rectal bleeding, and damaged my throat. There were many ER trips. In the end, I was diagnosed with adnomyosis, PCOS, endometriosis, pelvic adhesive disease, sphincter of oddi dysfunction, pancreas divisum, and chronic pancreatitis. The PD can only be seen, barely, on MRI and confirmed by ERCP. The SoOD can only be diagnosed through an ERCP. The pancreatic scarring that caused chronic pancreatitis can only be diagnosed through endoscopic ultrasound or visual inspection. The endometriosis and PCOS can only be confirmed by visual inspection if there are no masses visible by ultrasound. The adnomyosis can only be confirmed by seeing and feeling the uterus (for spongey, porous texture). The theme here is that none of these things are found by conventional tests. They all required higher level tests or specialized procedures to find. Over the years I found my own intuition to be my best guide. So hang in there, and keep fighting for discovery as the answer is out there- you just have to find the right person to see it. Also, stay hydrated as much as possible or you could end hospitalized with heart problems because dehydration can deplete potassium (I learned this after one of my little ER trips).